Game. Club. Community. Makeda.
A message from Makeda - “Thank-you VanU families for helping fund my AGU shot”
Within 24 hours of reaching out to VanU families with Makeda's story over $10,000 was raised.
Makeda's Story
One of our U13 players, Makeda Insley, who has played with VanU since she was 5 years old, was diagnosed with a fatal, extremely rare neuro-degenerative disease (AGU) which will significantly shorten her life expectancy (25 – 35 years). If it goes untreated, her intellect, speech and mobility will start to decline, worsening her quality of life for those remaining years. Makeda is the only child in Canada with the disease.
We have learned that a potential cure that has been under study for some time is set to go to clinical trial in 2021 if it has the funding. Makeda’s family led by her mother Barbara, along with 4 other families around the globe, have come together to raise $2 million USD to fund the clinical trial.
To learn more about Makeda’s story, watch this CTV News piece:
https://bc.ctvnews.ca/video?
You may also be interested in Makeda’s GoFundMe page (link is below) which itself has a link to the charitable website, with further information on Makeda, the disease and the clinical trial:
https://gf.me/u/zau65j
If you would like to learn more about Makeda and her family’s efforts, please contact Barbara at info@raretraithope.ca
In keeping with our motto, Game, Club, Community, we, VanU’s Board, thought it appropriate to share Makeda’s story with the membership.
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